Woman Documents Herself Slowly Dying From A Rare Disease To Show Why Euthanasia Should Be Legalized

By Holly Warland:

My partner and I have been documenting daily life with a disability through Instagram without the filters and mushy inspo-porn. I’m brutally honest and open with my photos, revealing aspects of disabled life that you don’t often hear about.

I wanted to show more of this darker and more honest side to disability, so my partner and I have been documenting my daily life

I have a rare condition called Limb Girdle Muscular Dystrophy. It involves the gradual deterioration of all my muscles from the chin down leaving me predominantly bed bound and reliant on care.

I figure if people are going to stare at me, make them laugh. I’ve always tackled things with humor and a sprinkling of pessimism. I know that doesn’t sound healthy, but it’s impossible to feel positive and ‘inspirational’ when you have a degenerative condition with no cure in sight. Things are literally only going to get worse. I wanted to show more of this darker and more honest side to disability.

Luke: a partner, a carer, a cat-wrangler. I’m convinced some philanthropist is paying him millions to make my final years the happiest they can be

This is Luke; my photographer, partner, carer, kitty dad, and all-round incredible human.

He’s the one behind the scenes of every one of these pictures. He never leaves my side, regardless of my mental or physical condition.

I’m convinced some philanthropist is paying him millions to make my final years the happiest they can be. There is no other explanation because look at him. He’s gorgeous, loves cats, and gives great massages.

I love him with all my brain.

I used to be unstoppable. I was halfway through my neuroscience Ph.D. specializing in ASD children’s ability to read facial expressions when my MD exacerbated

Giving a speech at a conference, pre-bodily breakdown.

I’m not humble about my achievements because I feel proud of the obstacles I overcame to achieve what I did

Presenting my Honors thesis (also pre-BB).

I’d present at conferences about my research, be on science panels, teach at my university, and write academic articles.

Now it’s gone. But I’ve realized I stressed my whole life over a piece of paper. I went straight from high school onto 7 years of university. I worked my crippled arse off and now I have no future to use my skills.

It’s hard to let go of your entire life plan but also oddly satisfying.

This photo was taken a few months before everything went downhill

I felt happy and healthy and had the strength to do fun things like go out to dinner or concerts.

As well as dealing with physical problems, I also had to come to terms with my loss of autonomy. I can’t be spontaneous anymore, everything has to be planned. People have to work around me and how my body has decided to feel on any given day.

I used to be well enough for a weekly walk

Now, it’s been long 4 years of hospital visits

My condition is so rare that when I tell the doctors what’s wrong with me, I’m often left with blank stares. It’s not the doctor’s fault, I just feel like every time I am there for treatment I’m also a mini sideshow for the medical students.

This is one of many hospital visits. But due to the freezing temperatures they keep hospitals in I’m better off at home self-medicating. I can’t make my own body heat so you can cover me in blankets but I won’t warm up without an external heat source.

Life in bed is not a dream come true

As aforementioned, I’m basically bed bound. I can get up periodically to go to the toilet or have a shower but it takes a lot of energy and I’m often left gasping for breath. I know living in bed might sound like a dream to some but think about how bored you get after a week at home with the flu and just pretend that’s forever.

When I’m not trying to manage my pain or other physical maladies I’m watching TV, snoozing, or reading. Because of all the medication I’m on, it’s very difficult for me to concentrate so I can’t even keep myself busy with writing or working online. I feel my once alert and task orientated brain is turning to mush.

Even showers can be tiring, but at least no one can see your tears

A shower for me is simultaneously heart racing and relaxing. I sit in a specialized chair and with my right hand can direct the water. It makes my heart race because I’m sitting up using strength to hold my back and neck up. Luckily the glass acts as a head and shoulder rest. But the hot water also relaxes my muscles so it’s not an entirely negative experience.

This has nothing to do with nudity by the way. Luke caught me having a shower rest and figured it’d show another glimpse into the experience that is being Holly with the MD.

At the doctor’s; my second home

I had to have a difficult conversation with my doctor about how I’m petrified of becoming addicted to painkillers but need to increase my dosage due to my dip in strength and mobility now. I shed a few tears and he calmly explained that because of my condition, I was only going to get worse and there’s no possible treatment so I am kind of allowed to become addicted because there’s essentially nothing to lose. Of course he said it in a more professional way, he wasn’t advocating pill addiction!

Tonight I’ll go to bed and congratulate myself for making it through the day. I can’t spiral

Pale, sweaty, and mid-vomit: a daily occurrence.

This day was quite sh*t, if I’m going to be eloquent. This pic is mid dry heaving. Then 5 minutes later I’ll get the chills. It’s bloody miserable but I feel so grateful to have such amazing medicine available and that Luke was with me through every part. He literally sat and read a book next to me while I went through the motions.

Every time I get sick like this it makes me appreciate ‘normal’ days. I try my hardest not to let this affect me mentally. I can’t spiral.

I have had to come to terms with the fact that I will never get better and that I have to just get through each day

I like to think the expression on my face sums up how fed up I felt that particularly bad day.

We see a lot of pictures of sick people battling acquired diseases like cancer but most of these afflictions either kill you or you ‘recover’, so although the suffering may be great, it’s relatively quick.

We’re all brought up to believe in hope and that life will improve, it’s hard to be in a position where that’s unachievable.

I’m angry at you. I’m jealous. I want your sh*tty life. Because you have a life. It’s hard to cry with tubes up your nose

Today I was just angry. Furious that able bodied, well people complain about things in their lives. If you have a working body and mind, you can CHANGE things. So many people take their autonomy and body for granted. I can’t muster up sympathy for someone who doesn’t try. Who holes themselves up inside. You need to help yourself. Stop whining and be proactive. Lonely? Join a group that engages in your favourite hobbies. Unhealthy/overweight? Change your habits. Feeling down? Go for a walk in the sun.

I’m not trying to simplify depression or real problems, but YOU CAN CHANGE. I can’t. I’m stuck. I’m pissed off. My body dictates my day/life. I’m not being inspirational when I tell you to get off the couch and stop feeling sorry for yourself. I’m angry at you. I’m jealous. I want your sh*tty life. Because you have a life.

I’m old enough to vote, drink, drive a car, and have a baby, so why can’t I control when I have a nice peaceful passing?

I have been given the opportunity to advocate for issues close to my heart. One of these issues is the legalization of Voluntary Assisted Dying in my state. The unfortunate reality for me is that this condition will eventually make life unbearable for me and I want a safe and reliant option to end my life when I am ready. I never thought this was an issue I would become so passionate about but when I stopped to think about it, it’s my only humane option. I could wait until I die naturally but that might be decades of more pain and suffering.

I work with a group called Dying with Dignity Queensland to convince and work with politicians to pass fair and merciful voluntary assisted dying laws.

Not all frowns and clouds

I’m a self-proclaimed crazy cat woman. They are the perfect companions for someone stuck in bed all day

I have two cats: Ragnar (featured) and Whiskey. They are the perfect companions that provide great entertainment and love.

Everyone knows how much I adore cats and all my birthday and Christmas gifts are usually cat themed. If I could work in an office I’d be the lady with cat pictures and figurines everywhere.

Luke always cheers me up – even when I’ve had my blood drained, my pee stolen, and deadly x-rays blasted on my internal organs

Puns make life fun.

Still a little fighting spirit left!